67 research outputs found

    Involving high-grade glioma patients and their carers in qualitative research to promote structured physical activity: a mixed-methods study protocol

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    Involving High-Grade Glioma Patients and Their Carers in Qualitative Research to Promote Structured Physical Activity: A Mixed-Methods Study Protocol Show less Ishrat Islam, Silvia Goss, Annmarie Nelson, Anthony ByrneFirst Published February 4, 2021 Research Article https://doi.org/10.1177/1609406920982133 Article information Open AccessCreative Commons Attribution, Non Commercial 4.0 License Article Information Volume: 20 Article first published online: February 4, 2021; Issue published: January 1, 2021 Ishrat Islam1, Silvia Goss1, Annmarie Nelson1, Anthony Byrne1, 2 1Marie Curie Palliative Care Research Centre, Cardiff University, United Kingdom 2Palliative Medicine at Cardiff and Vale University Health Board, Cardiff, United Kingdom Corresponding Author: Ishrat Islam, Cardiff University, Neuadd Meirionnydd, Cardiff CF14 4YS United Kingdom. Email: [email protected] (primary) or [email protected] https://creativecommons.org/licenses/by-nc/4.0/This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License (https://creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages (https://us.sagepub.com/en-us/nam/open-access-at-sage). Abstract Introduction: Structured physical activity may improve physical, cognitive, and social functionality, as well as overall quality of life of people with high-grade glioma. Yet, engaging them in such activities remains highly challenging due to their unique disease burden and perceived “loss of control.” A greater understanding of patients’ interests, preferences, behavioral motivations, and perceived barriers around physical activity is needed to design tailored and patient-led physical activity interventions. This protocol describes the method and ethical considerations of a cross-sectional mixed-methods study that has been developed to collect such information from glioma patients and their carers. Methods and analysis: The International Physical Activity Questionnaire (IPAQ 7, short form) and semi-structured interviews will be used for data collection. IPAQ scoring protocol will be followed to examine objective data and Clarke and Braun’s thematic approach will be used to analyze the interview transcripts. Ethics: Ethical approval was obtained from Cardiff University’s Research Ethics Committee and from the regional NHS Research Ethics Committee. The main ethical concerns are to maintain patients’ safety and comfort and ensure that their consent remains informed and valid throughout the recruitment, data collection, management, and dissemination stage. Risks associated with their physical condition, emotional distress, and time commitment should be continuously assessed and necessary actions should be taken accordingly. Conclusion: The protocol will work as a step by step guide for future researchers for developing similar qualitative research and obtaining ethical approval when involving vulnerable individuals like high-grade glioma patients in studies

    Support needs and barriers to accessing support:Baseline results of a mixed-methods national survey of people bereaved during the COVID-19 pandemic

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    BACKGROUND: The COVID-19 pandemic is a mass bereavement event which has profoundly disrupted grief experiences. Understanding support needs and access to support among people bereaved at this time is crucial to ensuring appropriate bereavement support infrastructure. AIM: To investigate grief experiences, support needs and use of formal and informal bereavement support among people bereaved during the pandemic. DESIGN: Baseline results from a longitudinal survey. Support needs and experiences of accessing support are reported using descriptive statistics and thematic analysis of free-text data. SETTING/PARTICIPANTS: 711 adults bereaved in the UK between March and December 2020, recruited via media, social media, national associations and community/charitable organisations. RESULTS: High-level needs for emotional support were identified. Most participants had not sought support from bereavement services (59%, n = 422) or their General-Practitioner (60%, n = 428). Of participants who had sought such support, over half experienced difficulties accessing bereavement services (56%, n = 149)/General-Practitioner support (52%, n = 135). About 51% reported high/severe vulnerability in grief; among these, 74% were not accessing bereavement or mental-health services. Barriers included limited availability, lack of appropriate support, discomfort asking for help and not knowing how to access services. About 39% (n = 279) experienced difficulties getting support from family/friends, including relational challenges, little face-to-face contact and disrupted collective mourning. The perceived uniqueness of pandemic bereavement and wider societal strains exacerbated their isolation. CONCLUSIONS: People bereaved during the pandemic have high levels of support needs alongside difficulties accessing support. We recommend increased provision and tailoring of bereavement services, improved information on support options and social/educational initiatives to bolster informal support and ameliorate isolation

    Distinct regulation of hippocampal neuroplasticity and ciliary genes by corticosteroid receptors

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    Glucocorticoid hormones (GCs) are of critical importance for maintaining brain health, but their involvement in mental disorders is poorly understood. Here the authors show how GCs act through hippocampal mineralocorticoid and glucocorticoid receptors to impact the gene regulatory programs underpinning neuronal plasticity, ciliogenesis and behavioral adaptation

    Parental perspectives on the grief and support needs of children and young people bereaved during the COVID-19 pandemic: Qualitative findings from a national survey

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    Background During the COVID-19 pandemic, many children and young people have experienced the death of close family members, whilst also facing unprecedented disruption to their lives. This study aimed to investigate the experiences and support needs of bereaved children and young people from the perspective of their parents and guardians. Methods We analysed cross-sectional qualitative free-text data from a survey of adults bereaved in the UK during the pandemic. Participants were recruited via media, social media, national associations and community/charitable organisations. Thematic analysis was conducted on free text data collected from parent/guardian participants in response to a survey question on the bereavement experiences and support needs of their children. Results Free-text data from 104 parent/guardian participants was included. Three main themes were identified: the pandemic-related challenges and struggles experienced by children and young people; family support and coping; and support from schools and services. Pandemic-challenges include the impacts of being separated from the relative prior to their death, isolation from peers and other family members, and disruption to daily routines and wider support networks. Examples were given of effective family coping and communication, but also of difficulties relating to parental grief and children’s existing mental health problems. Schools and bereavement organisations’ provision of specialist support was valued, but there was evidence of unmet need, with some participants reporting a lack of access to specialist grief or mental health support. Conclusion Children and young people have faced additional strains and challenges associated with pandemic bereavement. We recommend resources and initiatives that facilitate supportive communication within family and school settings, adequate resourcing of school and community-based specialist bereavement/mental health services, and increased information and signposting to the support that is available

    Factors associated with higher levels of grief and support needs among people bereaved during the pandemic: results from a national online survey

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    We identified factors associated with higher levels of grief and support needs among 711 people bereaved during the COVID-19 pandemic in the UK (deaths 16 March 2020-2 January 2021). An online survey assessed grief using the Adult Attitude to Grief (AAG) scale, which calculates an overall index of vulnerability (IOV) (range 0-36), and practical and emotional support needs in 13 domains. Participants’ mean age was 49.5 (SD 12.9); 628 (88.6%) female. Mean age of deceased 72.2 (SD 16.1). 311 (43.8%) deaths were from confirmed/suspected COVID-19. High overall levels of grief and support needs were observed; 28.2% exhibited severe vulnerability (IOV ≥ 24). Grief and support needs were higher for close relationships with the deceased (versus more distant) and reported social isolation and loneliness (P < 0.001), and lower with age of deceased above 40-50. Other associated factors were place of death and health professional support post-death (P < 0.05

    Levels of grief, support needs and risk factors among people bereaved during the Covid-19 pandemic: baseline results from a longitudinal UK online survey

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    Background The COVID-19 pandemic has had a detrimental impact on millions of people’s experiences of bereavement. Traumatic end-of-life experiences and disruptions to support networks increase chances of poor bereavement outcomes. Aim To examine grief and support needs, and identify associated risk factors. Methods Mixed-methods survey of people bereaved in the UK from March 2020-January 2021, disseminated via media, social media, national associations, community/charitable organisations. Practical and emotional support needs were assessed in 13 domains, and grief intensity using the Adult Attitude to Grief (AAG) scale, which calculates an overall index of vulnerability (IOV) (range 0–36). Results 711 participants, mean age 49.5 (SD 12.9); 88.6% female; 95.3% white. Mean age of deceased 72.2 (SD 16.1); 58% died in hospital; 44% from COVID-19. Mean IOV was 20.41 (95% CI = 20.06 to 20.77), i.e. high vulnerability in grief overall. 28.2% exhibited extreme levels of vulnerability (i.e., IOV ≥ 24). In six support domains, all relating to psycho-emotional support, 50% to 60% of respondents reported high/fairly high levels of need. Increased levels of perceived support from health professionals led to significantly (P < 0.001) lower levels of grief and support need (small/medium effect, P < 0.001). Bereaved participants who were socially isolated/lonely experienced higher levels of grief and support needs than those who were not (P < 0.001). Grief and support needs were much higher for close family members compared with other groups (P < 0.05). Levels of grief and support needs were slightly higher for COVID deaths compared with non-COVID (P < 0.01), although this was not significant in a mixed model. Conclusions People bereaved during the pandemic experience high levels of grief and emotional support needs, with social isolation/loneliness and death of a close family member particular risk factors. Healthcare professionals’ support is associated with better bereavement experiences

    Prolonged grief during and beyond the pandemic: factors associated with levels of grief in a four time-point longitudinal survey of people bereaved in the first year of the COVID-19 pandemic

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    BackgroundThe COVID-19 pandemic has been a devastating and enduring mass-bereavement event, with uniquely difficult sets of circumstances experienced by people bereaved at this time. However, little is known about the long-term consequences of these experiences, including the prevalence of Prolonged Grief Disorder (PGD) and other conditions in pandemic-bereaved populations.MethodsA longitudinal survey of people bereaved in the UK between 16 March 2020 and 2 January 2021, with data collected at baseline (n = 711), c. 8 (n = 383), 13 (n = 295), and 25 (n = 185) months post-bereavement. Using measures of Prolonged Grief Disorder (PGD) (Traumatic Grief Inventory), grief vulnerability (Adult Attitude to Grief Scale), and social support (Inventory of Social Support), this analysis examines how participant characteristics, characteristics of the deceased and pandemic-related circumstances (e.g., restricted visiting, social isolation, social support) are associated with grief outcomes, with a focus on symptoms of PGD.ResultsAt baseline, 628 (88.6%) of participants were female, with a mean age of 49.5 (SD 12.9). 311 (43.8%) deaths were from confirmed/suspected COVID-19. Sample demographics were relatively stable across time points. 34.6% of participants met the cut-off for indicated PGD at c. 13 months bereaved and 28.6% at final follow-up. Social isolation and loneliness in early bereavement and lack of social support over time strongly contributed to higher levels of prolonged grief symptoms, while feeling well supported by healthcare professionals following the death was associated with reduced levels of prolonged grief symptoms. Characteristics of the deceased most strongly associated with lower levels of prolonged grief symptoms, were a more distant relationship (e.g., death of a grandparent), an expected death and death occurring in a care-home. Participant characteristics associated with higher levels of prolonged grief symptoms included low level of formal education and existence of medical conditions.ConclusionResults suggest higher than expected levels of PGD compared with pre-pandemic times, with important implications for bereavement policy, provision and practice now (e.g., strengthening of social and specialist support) and in preparedness for future pandemics and mass-bereavement events (e.g., guidance on infection control measures and rapid support responses)

    ‘There is nowhere to place the anger’: accounts of bereavement experiences during the COVID-19 pandemic

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    Introduction The Covid-19 pandemic has been a mass bereavement event, causing major disruption to end-of-life, grieving and coping processes. Based on their Dual Process Model (DPM), Stroebe and Schut have identified pandemic-specific risk factors for poor bereavement outcomes and categorised these in terms of disruptions to loss-oriented and restoration-oriented coping processes which grieving people naturally oscillate between. Loss-oriented coping involves focussing on one’s loved one and their death, while restoration-oriented coping involves continuing with daily life and distracting oneself from one’s grief. Aims To explore and describe bereavement experiences during the pandemic, relating our findings to the constructs of the DPM. Method Two independent online surveys were disseminated UK-wide via social media platforms and community and charitable organisations. They captured end-of-life and bereavement experiences (to all causes of death) from March 2020 to January 2021. Free-text data were analysed thematically, using the DPM as an analytic lens. Results Six main themes were identified: troubled and traumatic deaths; disrupted mourning, memorialisation and difficulties in death-related administration; mass bereavement, media and societal responses and the ongoing threat of the virus; grieving and coping (alone and with others); workplace and employment difficulties; and accessing health and social care support. Examples of loss-oriented stressors were being unable to visit or say goodbye and restricted funeral and memorialisation practices, leading to guilt and anger. Restoration-oriented stressors included severely restricted social networks and support systems, which affected peoples’ ability to cope. Conclusion These results highlight significant disruptions to end-of-life, death and mourning practices, as well as usual coping mechanisms and support systems, during the Covid-19 pandemic. The DPM provides a useful framework for conceptualizing the additional challenges associated with pandemic bereavement and their impact on grieving and mental health. Impact Recommendations are made for statutory, private and third sector organisations for improving experiences of people bereaved during this and future pandemics
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